Found Out How Low I Could Go

My gastro called me this morning.  My reds dropped to 9.1, and my whites dropped below 3 (can't remember what he said about that).  Hematocrit dropped.  He's having me see a hematologist so that he doesn't have to drop my riba dosing and so I can continue treatment; I have an appointment for tomorrow afternoon.  I guess he's on top of it after all.  Am I allowed to give his name on this message board?  I'm in Queens, New York.  Thanks again for all your responses yesterday.

[FlGuy]

A regular appt with a hemotologist is a great idea.  I went weekly, a quick blood draw and instant cbc results, then out the door.  If rescue drugs are need they give them there and you're on your way.

[cuteus]

for some reason I thought you were in the west coast!

People mention their drs all the time. Mine mas Dr Palmer and later Dr Bernstein.  As long as we are not releasing confidential information about them, I don't see a problem.
that hgb is quite low, the Procrit will take a wk or two to work depending on how low it is when you start. I'm on LI so, if the ins gives you a hard time I am so willing to depart from the 4 P's sitting in my fridge! good luck

[friscosue13]

My board name is a combo of my last two dogs' names!  My gastro is Dr. Miguel Cintron, and he's in my neighborhood -- Maspeth, Queens.  He actually listens, and discusses anything and everything.  Your generosity is truly touching, and I'll certainly keep it in mind should my ins fail.  I thought my last nine weeks would be a cake walk.  I guess it's true about the fat lady singing -- which is going to be me soon if I don't get enough energy to get back to my daily mile swim!!!

[NYgirl]

Hey you are not far from me then!  Us good ole NYGirls! :)

I'm glad that they are going to start you finally...as one who's been a 9 it ain't no fun that's for sure. That week I dropped was one of the worst in my life = it was too much too fast.  I just didn't GET how painful fainting was.

It will take WEEKS for the Epo to take a hold and get you straight so BE CAREFUL while it works.  Once you get up to like 10 soemthing you are going to be feeling BETTER (if you can believe it) and tend to forget that you are still VERY LOW.

Even now if I forget and do something too quick...I go WHOA I forgot as I grab ahold of something not to fall down.  

You'll be good in no time and thank GOD you didn't have to drop meds, I am truly psyched about that.  To me itw as worth dealing with it and keeping the chance of SVR rather than lowering my odds to feel better for a brief time.

[friole]

So glad youa re being referred to a hemo -- seems that they could have done it a week or two ago.  I function in the high 10s and low 11s with Procrit and feel reall lousy in the 10s.  I don't know how I would be able to function in the 9s.  Swimming has been out of the question for me -- I am actually more concerned about my absolute neutrophils being low leaving me open to infection with regard to swimming than the anemia, but I did a very small amount of swimming yesterday and really found out how much muscle I had lost (I am on week 50/56).  I hope you are able to coninue thru treatment.  I cannot wait to start again.
frijole

[GrandOak]

good to hear you're going to see a hematologist.  You'll most likely be looking at another round of shots of Procrit.  I currently have to take two because the largest single dose is 40,000 units and I need 60,000.

As for the WBC and Hematocrit, mine is near 2 and 30.  But I've been told that it's the WBS and ABS Neutrophils that one needs to be concerned with to see if yet another shot of Neupogen is needed.

[KAMO]

Hey, I'm on Long Island and my doc. is Dr. Bernstein in Manhasset.  Small world.......

[DoubleDose]

SUE:

Bear in mind that it will take about 2-3 weeks for the Procrit to 'kick in' and begin to raise your HGB levels.  Try to get this adjunct medication as quickly as possible, and start them as soon as your Hematologist can allow.  You do not want to have your red cells continue falling for another month or more!!!!

Time is of the essence.  The delay factor for Procrit means you want to get this drug introduced into your system as soon as possible.

Good news, and good luck!!!

DoubleDose

[sfbaygirl]

I saw the Friscoe screenname the other day and thought, no this can't be someone local to me! No locals call San Francisco by Frisco. It is sacriligeous to call it that. Of course some do, but it is not PC Lol!

Sorry to hear how low you are, geez, I know how it feels. It is awful. Hope you get some rescue drugs soon!

The Procrit is wonderful for the hemoglobin and anemia and I didn't have sx (that I know of) but the Neupogen and Neulasta do have sx, but you do need them!

[cuteus]

I  might even know you! some people yahoo to me after adding belleus to my present name.
I met a nice woman at Delphi that lives in Lindenhurst, shared a meal at the Olive garden with our daughters. It has been a pleasant experience.  She did go to Bernstein also, but now has someone else.
It was a trek for me, been in Suffolk, but whatever works. I was just thinking I should send the practice a TY note of sorts.  Did you have to do the Beck Inventory for depression?

[KAMO]

I'm in Nassau - Wantagh.  Everytime I go to the office they give me that form for depression.  So far so good.  I might have even seen you in the office....how long have you been going to Dr. Bernstein?  It was a little adjustment after Nancy left but I think the kinks are working out. They are a great group, just a pain to get to but you do whatcha gotta do.

[cuteus]

I thought Nancy came back after the twins birth, she is now gone for good? People don't stay long there! I saw Danielle, Bernstein and Nancy, lately I saw dr Lee. Last time I was there was Nov '05. Went there monthly from July'03 to nov'04. Then 4wks later and 12, 24, etc.  Canceled the appt I had in March.  Not sure who is going to be left when I go back!
this is so cool, another longislander!

[KAMO]

Very cool to know there are lots of you guys in the NY Long Island area.  I started with Nancy and Dr. B.  Nancy left cause her dad wasn't doing so well.  Took another job that lets her do more for him.  Since Dr. B. is so busy, when I go for my visits I see Dr. Lee now.  I've only been with them this year for my second time on tx - up to week 10 now.  Look forward to chatting more...